The parents of an Aberdeen baby who died from an extremely rare condition have launched a fundraising drive in memory of their “little darling”.
Lynette Allan and Duncan Barclay’s daughter Sandie Jane Barclay passed away aged only 14 months old.
It wasn’t until she was flown by air ambulance down to Edinburgh after months of visits to hospital that they were told by doctors she had TANGO2 – a rare metabolic condition.
A study in 2018 by the TANGO2 Foundation said there were fewer than 30 affected individuals worldwide.
It meant that when she fell ill, her immune system kicked in and her body stopped putting nutrients to her vital organs.
Lynette, from Dyce, said she had a normal pregnancy, however started fearing the worst when Sandie wasn’t meeting her milestones.
The 29-year-old said: “We were back and forth to the hospital from eight months to 14 months, about twice a month. She would stay in for a couple of nights then get put home. It was just in our heads all the time. Deep down I knew there was something, but never in a million years did I think it was going to be anything like this – the worst-case scenario.”
Questions were raised when she wasn’t sitting up as she should be, or reaching out and playing with toys.
Despite this, her parents said Sandie was a happy and content baby.
Lynette said: “She was such a good baby and such a happy little toot.
“She liked her little foil blanket. She loved her food. She loved a sausage casserole -that was her favourite.”
After months of visits to and from the hospital, she was rushed to Aberdeen Royal Children’s Hospital earlier this year, where she ended up in the high dependency unit for two weeks. When her condition worsened she was transferred by air ambulance to Royal Hospital for Sick Children in Edinburgh.
It was there a metabolic consultant confirmed their little girl was suffering from one of the world’s rarest conditions.
Lynette said: “Within about 24 hours the experts there diagnosed her. They told us she was the only one in Scotland with TANGO2.”
Sandie clung on to life for several days but she eventually passed away on March 28.
Lynette said: “It was heartbreaking to see, but the doctors tried everything and we could see for ourselves how much staff worked. There were about 17 or 18 infusions on her at the end.
“But her body had just had enough. She’d been through so, so much in the short time she was with us.”
Lynette and Duncan have since been in contact with the TANGO2 Foundation, which is based in America, and have also spoken with other parents of children with the condition.
Now, the couple hopes to raise awareness of the condition and has already raised more than £5,400 for charity in honour of Sandie.
It was hoped that a big function and celebration of her life could be held, but due to the coronavirus pandemic, this has not been possible.
Lynette added: “Because she never got the send-off she deserved, we were only allowed 10 people at her service and we never got to have the service we would have given her but we made it as beautiful as we could.”
A Facebook and JustGiving page has been set up and they plan to hold an online raffle at a later date to raise more money.
Lynette said: “We wanted to have a big function and make it a celebration of Sandie’s life as well as make it a fundraising night to raise awareness of TANGO2. The money would go to the TANGO2 Foundation, the Scottish Air Ambulance and the Edinburgh hospital.
“But with Covid, we just don’t know when we’re going to be able to do that and I just want it out there now, because what’s the point of waiting?
“They said Sandie was the only one in Scotland, but there’s got to be more people. We want to raise awareness.”
Anyone who would be interested in giving a donation to the raffle can contact Lynette and Duncan through the Our Little Darling Facebook Page.
To donate to their fundraiser, visit https://bit.ly/2TFEx1H